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This is Caring: Julia

Julia Jones, 62, has children, grandchildren, a partner and work that she loves. She is also a primary carer for her mother June, 92, who has dementia.

Describing the start of her caring role as “standing in the wrong place when the music stopped", Julia has gone on to lead a major campaign and incorporate her own experiences of caring into her work as a writer. Her most recent book, Beloved Old Age, interweaves the caring experience of novelist Margery Allingham in the 1960s with her own experience 50 years later. Margery’s book was called The Relay, Julia feels she has been handed the carer’s baton.

I first saw the signs of mum’s dementia when she became increasingly unstable. It was like living beside a volcano. She was lonely and unhappy and often horrible to be with. Sometimes she would go outside early in the morning and howl.

Her formal diagnosis came at the memory clinic of her local hospital. There had already been what felt like a long period of assessment by her original GP and a consultant. After her diagnosis there was no support, I felt that she and I were, in effect, tipped out into the snow to get on with it.

I didn’t want to be mum’s primary carer. I felt as if I’d been standing in the wrong place when the music stopped. However, I can honestly say that almost all my distress was for mum and that at least the formal diagnosis focussed our minds and stopped me blaming her for behaviour that was beyond her control.

One of my coping mechanisms is to write down what is happening and try to use this process to analyse my own reactions, which I hope can allow me to manage future situations better.

That was the germ of my book, Beloved Old Age. Reading and reflecting on Margery Allingham’s earlier experience as a carer helped me develop a sense of perspective. Margery’s unpublished book convinced me that caring could be a beneficial activity – for me, not just for mum. She presents old age and end-of-life care as an integral part of the human experience. Reading her experience and writing about my own has also kept my focus on my own life and my other priorities.

During the period that I was writing Beloved Old Age, mum was still living in extra care accommodation. It was a lovely way for her to keep as much of her independence as possible for as long as possible. It took quite a lot of organising and I spent four or five days a week with her. But we had a lot of fun, especially when I used to take her horse riding or out on my boat. Dementia needn’t stop anyone doing anything if their body can still manage it and if they have the necessary personal support.

Mum has always been stubbornly independent and it was important for her to be “allowed” to go out even if she sometimes got lost or upset. She was lucky to live in a very caring community and I often heard that people had discreetly guided her back home again. Social services were often involved and it was a great relief when mum and I met a social worker who understood the concept of “positive risk-taking”. I supplemented the basic domiciliary care provided by the extra-care housing with a daily rota of family, friends and paid companions. It took a bit of organising but Mum was still living a “real” life, despite her dementia.

When my friend Nicci Gerrard described the catastrophic effect that a stay in hospital had on her father, John, I decided that nothing like that should happen to mum. Families can be excluded from offering care in hospital due to the visiting hours’ system. I was spending so much time with my mother that I knew her needs the best. She was developing such essential trust in me; it would be unthinkable to be separated by visiting hours, at her time of greatest need. That’s why Nicci and I set up John’s Campaign in 2014.

The primary focus of our campaign is to ask that carers should be welcomed at any time if the person they care for is admitted to hospital. That includes staying overnight, if the carer wishes to do so.

Two years later, change is on the way and over 400 hospitals throughout the UK have signed up to implement John’s Campaign with nursing and care homes starting to join them. When Carers UK’s Chief Executive, Heléna Herklots, spoke at the John’s Campaign conference she shared her hope that together we can create the expectation that if the person you look after is in hospital and you feel your presence outside visiting hours would be valuable, then you can refer hospital staff to the campaign and ask them to implement it. By building networks of carers who are raising these questions throughout the UK, we can really drive change on this issue.

Mum is reaching the later stages of her illness now and has recently moved into a dementia specialist nursing home near me. This move was traumatic but was unavoidable. Although she now has 24 hour care I do not feel any less responsible for her well-being. In some ways she may need me even more.

Margery Allingham explained care in old age as a time when the baton of identity is being handed on. It’s a fascinating concept and I can see that my role is not only to help mum feel safe and loved, but to remind her who she is and reassure her that she has mattered.

I am with her in the morning and the evening every day. It’s a relief to me to be working in partnership with experienced professionals and I am grateful for their understanding that what I have to offer mum is personal and special. I know that I am welcome in the nursing home at any time, day or night. That’s as it should be as this is now my mother’s home, probably until the end of her life.

At the end of the John’s campaign conference, Tommy Dunne, a man living with dementia addressed the audience. He told us that he was not afraid of dying, but he was afraid of going into hospital or into residential care. He wanted to know that his wife Joyce would always be with him for as long as she wished.

Part of this fear comes from the stories of unkindness or neglect in the institutions where family carers may not be welcome. Perhaps our carer journeys need not just be individual pathways; perhaps by working together to ensure there are no more closed areas we can do something to reduce the fear felt by people like Tommy, who already have quite enough to contend with.

Beloved Old Age

An unpublished work by detective novelist Margery Allingham, The Relay, was discovered by Julia Jones when she was researching Margery’s biography. Beloved Old Age interweaves Margery’s reflections on caring for her mother in the 1960s with Julia’s experience today. Available now from Golden Duck publishers, £9.99.

John's Campaign

Behind John’s Campaign lies the belief that carers should not just be allowed but should be welcomed in hospitals and all residential institutions outside visiting hours, and that a collaboration between the patients and all those connected with them is crucial to better health and well-being.Find out more: johnscampaign.org.uk